I look mostly normal, but I’m not. Even when you can’t see it, I’m fighting with my body, and my mind. Strangers have no idea what is happening inside me, and people that “know” me, only know what I tell them, unless they read my writings. I feel like I should make up a pamphlet and hand it out as I walk by strangers. Maybe it would help me feel less judged. Maybe it wouldn’t.
I started writing this a few months ago on a particularly bad day, and really didn’t intend to publish it. Then it occurred to me that it may be similar to how others with chronic illnesses are feeling, so I came to the conclusion I should share what I would include in this “pamphlet.” It would be easier if I could just download it into people’s brains like software. That way, when they look at me, their brain can automatically know:
- It physically hurts me to speak up. Please don’t try to speak to me when it’s noisy if you can help it. I specifically wait for breaks in louder noises (i.e. wait for the people on tv to stop speaking, or a break in a song,) to speak so that I don’t have to strain. Something that should be pretty easy has gotten extremely hard over the years. I used to play the trumpet in middle and high school. I suspect that the breathing exercises required for that helped me to not have to strain back then because I used to be capable of being pretty loud. In the past 10 years, it’s gotten harder and harder to make my voice come out.
- Silence bothers me badly. I hurt all the time, and sometimes, no matter how hard I try to cover it up, pain like that causes me to make sounds. Without some background noise to cover those little grunts and groans up, I get to feeling very self-conscious. Silence can also create a pounding in my ears. It’s quite irritating. If you’ve ever heard or read that expression “The silence was defeating…” well, it can really feel that way sometimes.
- On the flipside, too much noise, too sharp of a sound, or too loud, and it feels like someone is taking an ice pick and hammering it into my ears. Quite an annoying issue for someone who has been involved in bands, concerts, clubs, and all that other loud stuff. I can’t always listen to music because sometimes my senses are on overload and it’s just too much. Those can be some of my most frustrating days.
- Any type of touch, even the lightest one, can hurt on some days. On the worst days, clothing hurts to the point of bringing me to tears. Sitting for more than a few minutes makes the back of my legs feels like they are black and blue with bruises, so I stand. Standing for a few minutes makes the bottom of my feet feel bruised, so I lay down. A few minutes later, whatever side I’m laying on starts feeling bruised, so I turn over until that side hurts too badly. Then, I go back to the sitting position. It’s a vicious cycle that I deal with at least 15 days a month. Sometimes more. Sometimes it’s all day, or even days, like that. Sometimes, just a couple of hours. It’s exhausting, especially when combined with nerve pain. Nerve pain alone is the most irritating pain that exists because you can’t really do too much to help it. The constant burning and stabbing wears you down mentally, very quickly. It makes life a blur when it gets to it’s most intense point. I’ve tried medication for nerve pain, but the side effects were never worth the minimal relief the meds offer, so I’ll suffer until it’s so constant I can’t cope anymore, then revisit medications. That’s what being chronically ill is all about- weighing the side effects against symptoms, and risks against the rewards. We play a constant game of desperately trying to balance the scales.
- I try. I try so hard to handle this pain and nausea without it being obvious. I try to find ways to be useful so I can help as much as possible. I hate being a burden. I despise feeling like I can’t contribute or take care of myself. I used to be very independent. I try not to bother people. I go out of my way to see something from another’s point of view so I can try to accommodate them. Not because I want to please people, but because I don’t expect it to be all about me.
- It can get hard. So hard I want to give up and have to really go through my reasons for living over and over in my head. I’m not ashamed to admit this because I’m human. If someone really expects me to be able to be happy all the time and always loving life with the experiences I go through, they are an unreasonable person, because I promise they could not do so. Maybe it’s arrogant or assuming for me to say, but I’m convinced that the average person couldn’t handle my body or life.
- I just want you to act normal. I would rather live like this than watch someone go through it, so I get it when you look away, or don’t come around. I understand that I’m not your priority. I don’t expect to be. I do wish you would just treat me the same as you always have, with the exception of understanding I have a different body now, so I’m not always physically capable, but my mind is still here. I’m still here.
- If I could do anything to have a body that works, I would. You cannot imagine how much I miss my life, and the ability to control and predict my body. I had so many plans, goals, and dreams. Although having a chronic illness doesn’t mean I can’t have plans, goals, & dreams- it does mean those things have to be adjusted to be realistic- and it’s a huge difference. I mourn for those things I can no longer do. Everyday. No one actually chooses this life. Those who pretend wouldn’t do so if they had to live it for even an hour. Yeah, it’s like that.
These are the things I wish everyone knew before they even had their first thought about me, but that’s not how life works. We don’t get to zap knowledge into anyone’s brain and can’t force people to read the pamphlets, even if we would get desperate enough to make some up. People are going to see us in public, or notice the lack of our absence at an event, and decide they know all about us and our laziness, or pity and avoid us. We’re strong though. Our conditions have guaranteed that- and we’ll cope like we do everyday- and keep pushing forward, battling our bodies and living our lives. We are #chronicillnesswarriors